Elain James was referred to Tyˆ Hafan in January 2011 when she was just 8 months old. Elain was antenatally diagnosed with congenital heart disease, but it wasn’t until she was born that her family knew the full extent of her illness. Tests revealed Elain had multiple, complicated heart conditions and a rare genetic disorder called 22q11.2 Deletion Syndrome. She also has a permanent feeding tube attached to her stomach.
When Alice was born at 34 weeks, the doctors delivered devastating news to her mum and dad – their newborn baby girl had just 20 minutes to live. Barry and Rebecca had known their daughter was at risk since their 20-week scan had picked up problems, with serious implications for their unborn baby’s safety. But they could never have imagined the difficult road that lay ahead of them.
When baby Ollie was born in June 2014, he wasn’t breathing. So he was resuscitated before being put in the arms of his Mum, Sophie. She and her husband Sean took their precious new-born son home the next day, but for some reason, they knew something wasn’t right.
In 2001, Wendy and Adrian Watkins were looking forward to the birth of their twins to complete their family and provide their nine-year-old son, Aled, with siblings.
I think the biggest thing that Tŷ Hafan gives the twins is confidence. They are really quiet and sometimes don’t say anything at all in certain environments, but at Tŷ Hafan, they are totally different and can be themselves.
To me Tŷ Hafan is a special place. It is a place where you have fun, laughter and tears too. The staff from the cleaners, chefs, care team, nurses and admin workers are all wonderful and make you feel so welcome at Tŷ Hafan.
I have twin brothers who are 13 years old who have Duchenne muscular dystrophy. We have been coming to Tŷ Hafan since 2009. I have had some great times at Tŷ Hafan and have attended many sibling evenings.
Many people don’t know that Tŷ Hafan cares for the whole family, including the grandparents. It is a fantastic charity that does so much good for the twins and our entire family. They make me feel so welcome and we always have so much fun and lots of giggles when we’re there.
As one of Lewys’ links I am allocated to work with him when he visits Tŷ Hafan. But as him and his brother, Rhodri, are inseparable you pretty much work with both of them.